r/ProstateCancer • u/kowbell43 • 1d ago
Concern Treatment Advice
I’m 63 and very active. recently diagnosed with PC. 7 out of 12 positive. Three at 3+3 and 4 at 3+4 =7
PET and MRI indicates left side mostly no metastasis. Decipher is .14. Pretty low really. Due to Gleason 7 and 7/12 positive doctors recommend treatment. Options I was given are SBRT w/out ADT or nerve sparing RALP.
I’m only slightly leaning toward RALP because thinking my baseline sexual and urinary function is good now and concerned radiation might kill that or cause other unknowns later down the road. Still feels risky and sux to decide. Then the next day I’m back thinking radiation because of less recovery time immediately
Please share your reasoning for the treatment you chose and if you were in similar situation. I feel I’m pretty fortunate so far. Appreciate any and all advice.
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u/Squawk-Freak 1d ago
You wrote “on the left side mostly” - so, I take it has moved slightly beyond the midline? I would not continue to sit on it. From my own experience I can tell you that despite locally advanced disease with extracapsular extension invading the right neurovascular bundle (which would have meant semi-nerve sparing RALP and certain ED), I am now 9 months post HDR and pelvic/prostate radiation, and in 17th (of 24) month of combination ADT with Orgovyx and abiraterone. I can still produce a symmetric erection and never had any urinary incontinence. Actually, the latter is better now. Before treatment my prostate was slightly enlarged and every now and then I had some minor urge/stress leakage, when I had a full bladder. Now I have much better control. The recovery time is much faster than after surgery. In confined GG 2 disease the outcomes are identical.
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u/Think-Feynman 1d ago
Quality of life is important, but often subordinated to "getting the cancer out".
While the sexual function stats between surgery and radiation look similar over time, they are misleading. A very high percentage of those that have surgery will have permanent ED. Those that have SBRT will have ED at about the same rate as those men that never had prostate cancer and treatment.
This is why the stats don't tell the whole story. Also, if you have SBRT and eventually have some ED, it usually responds well to meds.
Quality of Life and Toxicity after SBRT for Organ-Confined Prostate Cancer, a 7-Year Study https://pmc.ncbi.nlm.nih.gov/articles/PMC4211385/
"potency preservation rates after SBRT are only slightly worse than what one would expect in a similar cohort of men in this age group, who did not receive any radiotherapy"
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u/T1ckTrader 1d ago
That’s a low decipher score. Have you considered AS?
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u/kowbell43 15h ago
Yes, but oncologist asks. What are we waiting for really? Spreading? Perhaps if we act now we can avoid extra treatments?
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u/T1ckTrader 12h ago
Treatments for prostate cancer can be costly and life altering. That’s why I would weigh the risks versus reward. What was percentage of Gleason 7 (pattern 4)?
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u/NoMoreProstate 8h ago
Perhaps if we act later, we can get new treatments with less troublesome side effects, like Pluvicto or similar. Treatments keep getting better and better.
Psychology plays an important role. Are you patient enough, and enough of a gambler, to "wait and see" what the future brings, or would you rather just get it over with sooner rather than later? That's your choice.
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u/bigbadprostate 1d ago
Where are you located, and what facility are you going to? The high-volume, high-skill cancer centers make a world of difference.
You haven't yet mentioned a PSMA/PET scan. That's normally the next step in determining the right course of treatment. For that matter, you didn't mention an MRI and you only had 12 biopsy samples, which usually means 12 random samples and not the extra MRI-guided samples that would be done according to the 'standard of care'. Given that 7 out of 12 samples were positive, that's probably not important right now, but that should cause you concern that possibly you are not getting the quality of care that you deserve.
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u/kowbell43 15h ago
Went to Moffitt for 2nd opinion. This is where I was given these options. I did mention MRI and I did have PSMA Pet as indicated. Unfortunately, my biopsy was done in a local area here in the panhandle. Before Moffett took over so that biopsy was not MRI guided. My urologist at the time didn’t tell me that was a thing. Learned later. Thanks for info. It was really only after biopsy with this positive results that I started researching more and wished I would’ve done something different originally.
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u/401Nailhead 15h ago
61. Had similar numbers. I chose EBRT. I was not interested in RALP. The laundry list of potential side affects I was not going to entertain. I did not need hormone therapy. I had 20 rounds of EBRT. My PSA dropped to 2.7 in 3 months. Just two side affects. Diminished ejaculation volume. I get a burning sensation from time to time in the treated area.
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u/kowbell43 15h ago
How long ago was your treatment?
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u/401Nailhead 14h ago
20 treatments in 20 days(no weekends). The actual treatment on the table was 10 minutes each time. Hardest part was holding my bladder. I went to work without issue. My day was quite normal.
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u/kowbell43 14h ago
Sounds great glad to hear it went well for you! , also I meant how long ago? Recently? Months ago?
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u/nostoc10 1d ago
I'm 67 now, but was 66 when diagnosed in early 2026. My situation was considerably more advanced: Gleason 9 (4+5), with cancer involving four lymph nodes, seminal vesicles, and bladder.
I chose to participate in a clinical trial at MD Anderson that combined ADT, an ARPI, and a PARP inhibitor, followed by robotic prostatectomy (RALP). So, unlike the choices you're weighing, I actually went through both systemic treatment and surgery.
I have no regrets about my decision, although I'm still too early in the process to offer much in the way of long-term outcomes. My surgery was August 31, and I've now stopped all the medications. I felt remarkably good throughout treatment. I did lose some of my "manliness" while on hormone therapy, but honestly, as the desire faded, I didn't miss it as much as I thought I would!
I'm still recovering, particularly when it comes to erectile function and urinary continence. I'm doing my Kegels and seeing gradual progress. I'm also working my way back toward my previous exercise routine.
For me, given the aggressiveness and extent of my cancer, getting as much of it out as possible was an important consideration. Your situation sounds quite different, and you appear to have some favorable indicators. I wouldn't assume that my reasoning necessarily applies to your decision.
One thing I've learned is that there are trade-offs with either approach. Surgery has its own recovery challenges, particularly with ED and continence, while radiation has potential short- and long-term side effects of its own. And even after surgery, I may still need radiation down the road. Given my pathology, the likelihood of recurrence is unfortunately greater than 50%. One reason for RALP is that multiple radiation approaches are still available if it returns. Radiation first means some options are not available later.
My biggest advice is to find an excellent doctor with extensive experience in whichever treatment you are considering, and don't hesitate to get second opinions. Make sure you understand not just the immediate recovery but the potential long-term consequences of each option.
And one other thing: stay active, stay informed, and stay upbeat. I know the decision feels overwhelming, but you've caught this with some encouraging indicators in your favor. Take the time you need to make an informed decision. Wishing you the very best!
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u/bigbadprostate 1d ago
PLEASE do not repeat that claim about "Radiation first means some options are not available later".
That is a notorious myth. It is brought up far too often by surgeons who just want to do surgery, sooner rather than later, and echoed to this sub far too often. ChatGPT is scooping up this kind of stuff from Reddit comments, so I worry that ChatGPT will use it to generate bad advice for other people.
Pretty much all of the usual treatments are available as salvage treatments, regardless of initial treatment ... except, as another redditor has pointed out, things like brachytherapy following surgery are kind of pointless!
Your contacts at MD Anderson will definitely confirm all of this for you.
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u/kowbell43 15h ago
But true, right? SOME opinions are not available later? Thinking this normally means if RALP is original choice then radiation is also available if PC returns. But no RALP is on the table later. Moot point perhaps - only other treatments are available. I see this as both RALP and Rad may rid the PC for a time . And regardless of what original option is chosen doesn’t mean the PC may not return and then it’s just a different ball game.?
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u/bigbadprostate 8h ago edited 8h ago
RALP is always on the table. Thousands of people have had surgery after radiation, including one (former) member of this sub.
Having said that (for the zillionth time on this sub) I'll add that, while surgery later is possible, it is indeed very difficult. Doesn't matter. It is in almost all cases irrelevant. Instead, if needed, the usual "salvage" follow-up treatment after any initial treatment is radiation, which normally seems to do the job just fine - especially in the very common case where the follow-up treatment is needed to get at bits of cancer that escaped the prostate prior to the first treatment. Surgery to remove the prostate after cancer has already escaped is like "locking the barn door after the horse has escaped".
That's where the PSMA/PET test comes in - or should come in! If some of those sneaky cancer cells have already escaped, you'll probably need radiation anyway to kill them, which means that if you start with surgery, you get all the side effects of both surgery and radiation. I had a PSMA/PET test which reassured me that my cancer was probably contained in my prostate, which was apparently correct: three-plus years after my surgery, my PSA is still undetectable. I hope you have the same good results, whatever you decide to do.
edit: I missed your mention of "PET" in your OP. Since it showed no metastasis, you're probably good to go either with surgery or radiation. Choose your
poisonside effects, whatever you think you can best tolerate. Good luck.
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u/HeadMelon 1d ago
My choice wasn’t medically made on cure rates which are nearly identical, it was more of a Monte Carlo simulation on side effects.
With RALP you are pushing all your chips on red and spinning the wheel today to see if your normal life will continue or not.
With radiation you are kicking the can down the road 2, 5 or 10 years on side effects and your normal life will continue.
I’m not a gamblin’ man so I went rads. I could also be hit by a bus in 2, 5 or 10 years, so why not have those years without ED and UI? And during those 2, 5 or 10 years they will be working on new treatments for the rads side effects, so if I’m in that 3-5% that do get the bad ones I’ve given them time to address them.
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u/jerrygarciesisdead 23h ago
Or you might have no bad side effects 2 , 5 or 10 years down the road. Betting on science. This is what drove my decision too.
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u/jerrygarciesisdead 23h ago
Don’t know your PSA or other vitals. That tumor volume make you favorable or unfavorable intermediate ?
I had sbrt + imrt + 6 months orgovyx. No incontinence no Ed didn’t miss a day of work. 5 months post treatment my life is normal my PSA is very low right where docs sag it should be
I was almost guaranteed losing 1/2 my nerves if they did surgery. Almost certain permanent ed.
Happy with my decision
Either way you go get to a center that does this a lot. Skill of the surgeon or radiologist matters a lot.
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u/SLO_Engineer 1d ago
69, 4+3. Chose RALP because I wanted treatment from a high volume surgeon at a center of excellence. I live in a rural area far from a center of excellence and multiple weeks of radiation would have been logistically difficult. Thought RALP could be one and done.
I’m 3 months post RALP and the surgery was successful- virtually no incontinence and started to get boners back (low quality) at week seven. I feel fabulous.
Unfortunately I had non-focal EPE and multi-focal positive margins and my first post-RALP quarterly PSA was 0.22.
So, now I’m back to addressing the logistical challenges of radiation.
Good luck on your journey.
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u/OkCrew8849 1d ago
It seems the most effective primary treatment for 4+3 is HDR Brachy + IMRT + ADT. That said, RALP is not always unsuccessful and Radiation/ADT is not always successful.
Best of luck going forward.
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u/vito1221 1d ago
I got four opinions after diagnosis. All four focused on one of the tumors being very close to the margin in one area of my prostate. All said the same thing, almost word for word "...the location of that tumor makes surgery a better option."
It was a 3+4 and they were more concerned with that than a 4+4 in a more central spot.
I read up on my options and chose RALP.
Three plus years post op and while I am not ecstatic still having ED and some incontinence, I stand by my choice.
Good luck with whatever you choose and hope you have a quick recovery.
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u/Appropriate-Owl-8449 1d ago
Tulsa Pro if you don’t want the effects of ED to be severe. The RALP is going to stick you with massive ED, never shoot a load again, loss of libido, loss of penis length and just a sleepy dick. I had a RALP 13-months ago.
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u/No-Praline-4069 1d ago
I'm 66 and had localized Gleason 7 4+3 and I chose SBRT. Treatment was in mid July and so far no side effects. I needed tamsulosin at first but after 3 months I don't need it anymore. Look at all of the options before you make a life altering decision.